Feeding Infants Right.. from the Start (FIRST) Study

What is the FIRST study?

A Prospective Multi-Center Observational Study to investigate the potential benefits and risks of breastfeeding in infants with cystic fibrosis (CF) diagnosed through newborn screening. A total of 160 infants will be enrolled and followed during 2012-2016 in five Pediatric CF centers with broad geographic representation (see below).
FIRST is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) and led by HuiChuan Lai, a faculty in the Departments of Nutritional Sciences, Pediatrics, and Biostatistics and Medical Informatics, University of Wisconsin – Madison.

Why is the FIRST study being conducted?

Nationwide implementation of CF newborn screening in 2010 has created a new opportunity to diagnose and treat all infants with CF within weeks of birth. However, optimal feeding for CF infants, i.e., breast milk, formula or a combination, is unclear.
Breast milk’s anti-infective property is superior to formula. However, breast milk may be nutritionally inadequate in caloric density, protein, essential fatty acids and sodium to meet the increased requirements of CF infants, especially those with MI and/or PI, who are at greater risks of poor growth.
Breastfeeding was historically discouraged for CF infants in the 1970s because of concerns with hypoproteinemia and hyponatremia. Despite these reports, a 1990 survey showed that 77% of CF centers encouraged breastfeeding, with nearly 37% recommending exclusive breastfeeding. Similar trends were confirmed by a 2004 survey.
The 2009 CF Foundation (CFF) Infant Care Guidelines continued its 2002 recommendation to suggest breast milk as the initial type of feeding for CF infants, based on little evidence.

CF Centers participating in the FIRST study

Coordinating Center
– University of Wisconsin Pediatric Cystic Fibrosis Center, Madison, Wisconsin

Other Participating Centers
– Children’s Hospital of Wisconsin, Milwaukee, Wisconsin
– Riley Hospital for Children Indiana University Medical Center, Indianapolis, Indiana
– Intermountain Cystic Fibrosis Center University of Utah Health Sciences Center, Salt Lake City, Utah
– Children’s Hospital Boston, Boston, Massachusetts